Monthly Archives: March 2013

The decision to pursue a diagnosis was difficult to make. There were times when I doubted my choice. Was it necessary to have a professional diagnosis? Would it make a difference?

Having gone through the process, the answer to both questions is yes. I have a strong need for closure. I don’t deal well with gray areas and uncertainty. That piece of paper that says, “299.80 Asperger’s Syndrome” closes off an avenue of doubt for me.

It also allows me to say this: if you think you’re an aspie or autistic–if you’ve done the research and talked to other people on the spectrum and see yourself in them, if you’ve identified a long list of autistic traits in yourself and come to the conclusion that ASD describes your particular set of neurological differences–then you are very likely correct. With or without an official-looking paper diagnosis, I think we are our own best judges of our neurology.

So, yes, getting diagnosed was worth the time, effort and expense for me. Yes, I’m fortunate to be in a position to have access to the resources I needed to pursue it. Yes, I also believe that self-diagnosis can be valid.

One of the reasons I’ve written in detail about the process is because I know that not everyone can afford or has access to a diagnosis. Not everyone is ready to pursue getting diagnosed. Not everyone has the executive function or the emotional resources to run the gauntlet of medical and mental health providers. Not everyone needs or wants a formal diagnosis.

But I think everyone who has bothered to read 11,000+ words of this series probably shares my interest in self-discovery. We know that we’re different and we want to know why and how and what that means. I spent less than 8 hours with the people who diagnosed me, but I’ve spent hundreds and hundreds of hours researching and writing about being autistic. That, ultimately, is what matters most to me.

My diagnosis, though it allowed me to put one set of questions to bed, has raised plenty of others.

Are there things in my life that I want to change?

Should I go for therapy?

Who should I tell?

How?

What does it mean to be Autistic?

These aren’t questions I can answer conclusively, even today.

Time to Change?

Once the newness of the diagnosis began to wear off, I was faced with the question of what to do with this new knowledge. I have a 10-page report from the neuropsychologist listing my cognitive strengths and weaknesses. I’ve become more familiar with and conscious of the areas where I struggle.

I’ve been told, not for the first time, that therapy would be beneficial. It’s an idea that I keep kicking to the back of the line, intent instead on rigorous self-examination. Like everything else I write about here, that’s my personal choice and not necessarily one that’s going to be right for anyone else. I’m not even sure if it’s entirely right for me.

Some changes require little more than mindfulness or occasional reminders; other changes require me to move out of my comfort zone and face some hard truths. The outcome–or at least the goal–is that I struggle less with some aspect of my life. Those are the good changes, the ones I’m eager to make.

Other changes feel pointless to me. These are often the changes that would make other people more comfortable by making me seem less odd. With all of the things I could be working on, I don’t see the point of investing my limited energy in those types of changes.

In fact, since getting diagnosed, I’ve become more echolalic, more stimmy, less conscious of censoring myself. I’ve become gentler and more compassionate with myself. I push myself less; cut myself slack where I wouldn’t have before. Not because I see myself as disabled, but because I see myself as a person in need of care.

I never really gave much thought to self-care before. I often demanded a level of performance and perfection from myself that I wouldn’t have expected from another person. I was so busy pushing myself to be better, to get things right, that I often neglected to be kind to myself.<

Perhaps that’s the biggest change I’ve made so far: I’ve resolved to be kind to myself.

Obviously, these are very personal decisions. The constellation of things that I choose to work on changing is unique to me. It continues to shift and grow. There are days when I think, “screw this, why should I change anything?” There are days when I think it would be nice to be “normal” for a day, to not have to struggle so much with simple things.

Then there are days when being autistic recedes into the background, not because I’m less autistic, but because I’m more comfortably autistic. Little by little, I feel myself healing old wounds, integrating the shiny new realizations, and becoming more myself.

Ninety-eight percent of the time I’m good with being autistic. I was going to say “fine with being autistic” or “okay with being autistic” but I don’t want to use tepid adjectives. I really truly feel good about myself most of the time.

Then there’s the other two percent. The hard, ugly, maybe I shouldn’t be saying this but I’m wishing for normal two percent.

When I was four or five years old, I wished I was a boy. Boys got to roughhouse and play cool sports and go shirtless in the summer.

I tried the shirtless thing. It landed me in trouble, though as far as I could tell I looked no different from the shirtless boys in the neighborhood. Later, I hung around the pick-up games and sometimes the older kids let me play. I learned to throw a tight spiral and catch a long pass no matter how bad it made my ice-cold hands sting afterward. Eventually, I learned to fight.

The desire to be a boy faded.

In third grade, I wished my curly hair was straight like Marsha Brady’s. All of the cool older girls-and by older I was thinking fifth graders–had straight hair. Somehow, it seemed like straight hair would magically make me popular.

A couple of years later “Farrah Fawcett hair” was all the rage, and if I spent enough time with my mother’s blow dryer and roller brush, I could feather my hair perfectly. It didn’t make me popular but it cured me of the illusion that better hair was the key to eternal happiness.

I’ve wished for other things over the years. To be taller: more clothing choices. To be more coordinated: I didn’t make the cut for high school sports. To be more feminine: I’m not sure why, exactly.

As I’ve gotten older, the wishes have become more amorphous.

Now I find myself trying to sort out where this wishing to be normal falls. Is it like wishing for Marsha Brady hair–that one elusive change that will make me magically popular? Or is it like wishing to be a boy so I can play shirtless in the summer?

Surprisingly, I think it’s more of the latter–more of a practical wish. You see, when I most find myself wishing to be normal is when I see the people around me struggling with the–well, for lack of a better term, let’s call it the side effects of my autism.

I don’t live in a vacuum. I say and do stuff. People around me are affected by it. Even though they know I struggle with certain things–they know this logically. That doesn’t prevent them from being affected by my words or actions or lack of words or actions.

This is when the wish to be normal sneaks up and grabs me.

I’m using normal and not neurotypical here for a reason. Normal is an illusion and I know it’s the illusion that I’m wishing for at these times. I’m not wishing for a different neurology so much as a fantasy version of life.

It’s easy to be seduced by the idea that being normal would solve everything, that it would make the lives of the people around me easier. But, of course it wouldn’t. We’d have some other problems instead, because life is like that.

And still it’s there, born out of frustration and insecurity, of a sense of never quite being good enough or right enough or just plain enough.

Maybe it’s a self-esteem issue. Mine has never been especially good. I seesaw between overconfidence and underconfidence, with no idea where the sweet spot in-between lies. Does anyone truly know this? I’m not sure.

I’m not sure it even matters. This will all pass. It always does.

At some point, I see the illusion for what it is, and the desire fades.

Thank you for all of the thoughtful questions! There are a total of 49–obviously too many to answer in one week. I’ve divided them up by subject, because, you know, autistic and need to categorize everything. I’ll spread the survey out over the next four weeks.

The vote on where to answer was a virtual tie so we’ll do it both ways. You can answer here in the comments or you can answer anonymously at Survey Monkey.

If you answer at Survey Monkey, just fill out the questions that apply/appeal to you and leave the rest blank. I’ll bring the Survey Monkey answers over here and paste them into comments so that everyone can read them.

If you answer here, it might be helpful to number your answers according to the question numbers. So if you’re answering questions 3, 5, 7 and 8, your answers would be numbered 3, 5, 7 and 8. That way we can easily scan down the comments looking for answers to the questions that interest us most.

A few questions were on the long side so I tried to include the essential information here and then added a link back to the original comment for more details.

This week’s topic is . . . relationships–friends, family, significant others, etc. Next week will be work/school and sensory sensitivities. Week three will be general coping strategies and acceptance. Finally, week four will be special skills and fun stuff.

ETA: Although a couple of questions reference diagnosis, this is open to all those who identify as on the spectrum (professionally diagnosed, self-diagnosed and suspected aspies/autistics/people with autism).

Relationship Questions

Does anyone find that you really long for close friendships?

Does anyone obsess over someone you’ve just met? ( almost like they become your ‘special interest’ )

Is anyone part of an Aspie married couple or long-term partnership?

What stuff have you learned about interacting with other people that you think is important to know but was not obvious to you at first?

How do you cope with parents who care, and are taking care of you (or at least helping you work on taking care of yourself), but don’t *understand* you? Don’t have the conception of how hard it can be to do things, like work on not taking naps when you end up exhausted, or deal with financial stuff, or do job searching, or talk on the telephone? more details here

How has your partner (if you have one) reacted to your late diagnosis and do they now see you as ‘disabled?’

Do you have autistic friends and if so, is it easier to hang with them rather than neurotypical folk?

What about the times that you don’t feel like having physical interactions with anyone? You don’t want hugs, kisses, or even simple touches. I am usually overwhelmed with sensory stuff at that point (auditory, visual, touch, taste, the whole mess) and I have trouble articulating it. Should I wait until I’m not in a crisis and try to describe these things to others in a way they might understand better? more details here

Has anyone been disowned by their family at diagnosis?

If you have children, are they aware of your ASD and how do they feel about it?

The day of the follow-up appointment finally arrived. As I rode the elevator up to the fourth floor, I felt my anxiety skyrocketing. I focused on breathing. I mentally rehearsed what I was going to say to the receptionist.

“I have a 2 o’clock appointment with Dr. H” isn’t complex conversation, but when I’m at a DEFCON 1 anxiety level, I can forget my own name.

The ten minutes I spent sitting in the waiting room felt interminable. I was contemplating a dash to the restroom when Dr. H poked his head around the corner and called me in.

If you want an example of how, er, unusual my conversation style can be when my social resources are low, this is the way our conversation began:

Dr. H: “Good to see you again. What’s new since you were here last time?”

Me: “You rearranged your chairs.”

Well, he had. The last time I visited, there was one guest chair facing his desk. Now there were three. That was not only new, it was messing with me, because I had to decide which one to sit in and none of the options was comfortable.

Too many chairs!

I settled on the middle chair and waited patiently while he made small talk about I have no idea what. Okay, semi-patiently. There was some discreet stimming happening. Maybe a lot.

Eventually–and I think the delay was him wanting to break it to me gently–he got around to telling me first how well I did on the cognitive testing and then that I’m clearly on the autism spectrum. I was relieved and yet somehow it felt unreal. For a moment I thought maybe I was dreaming because I’d been having a lot of dreams about the evaluation and follow-up appointment.

My nonresponse confused him, I think. Over the course of our one-hour appointment, he asked me three times how I was feeling about the diagnosis. Each time I said something like, “I guess I’m not that surprised.” I thought I’d feel something more strongly, but I was too focused on the information he was giving me about my test results to have any real feelings.

Seeing my cognitive processes summed up in a neat table of numbers and percentiles was fascinating. I hadn’t had a full IQ test since I was kid and back then no one would let me see the results.

Overall, the tests told me what I had suspected. My working memory, elements of executive functioning and verbal functioning are impaired. My nonverbal reasoning and verbal comprehension are significant strengths. The rest of my test scores fell in the average ranges.

I passed the ADHD test with flying colors, meaning that my distractibility is related to AS/executive function. This wasn’t a surprise, because my attention problems are situational rather than across the board.

The tests also illustrate how it’s possible for me to be both very literate and not very verbal. I scored highly on comprehension, spelling and vocabulary–receptive language skills or the ability to understand and process incoming words. I scored poorly on visual to verbal tasks (translating written words into speech), verbal working memory (remembering and repeating back spoken words) and verbal fluency (describing or listing words verbally). These are all expressive language skills.

There is definitely faulty wiring between my thoughts and my speech. There is a measurable discrepancy between my receptive and expressive language capacity. It feels good to have concrete evidence.

To give you an idea of how dramatically disparate the cognitive abilities of autistic individuals can be, I had a bunch of scores in the 98th and 99th percentiles, but I also had a cluster that included the 8th, 10th and 12th percentile. I am simultaneously off-the-charts extraordinary and bottom-of-the-barrel impaired. In yet other areas, I’m perfectly average.

One thing that really struck me in reading about spiky cognitive profiles and autism is that a profile like mine (nonverbal > verbal) is more strongly associated with impaired social skills than the reverse profile. It’s also interesting to note that the dissociation between nonverbal and verbal abilities grows more significant with age.

After reviewing the test results and confirming that I was okay with my diagnosis, Dr. H emphasized that he was most concerned about my social anxiety and felt that counseling would help me cope better with my daily life. He gave me a referral to a counselor experienced in working with autistic adults and I agreed to think about it. After thinking about it a great deal, I wrote this.

It took awhile for my diagnosis to sink in. At first, it didn’t feel real. In a way, I’d known for a while that I was an aspie. Dr. H even jokingly said at one point toward the end of our follow-up appointment, “You made a good diagnosis, doctor.”

In the days that followed, I slowly started to feel the peace of mind that I’d been craving settle in. By the time I received the written report on my tests, with its official looking diagnostic conclusions, I finally felt some closure.

I started this post thinking it would be about dyspraxia and Asperger’s. Dyspraxia, difficulty with fine and gross motor coordination, is often diagnosed alongside ASD. Adult symptoms of dyspraxia overlap with adult ASD traits to the point that even the experts have trouble separating the two. In fact, autistic individuals are sometimes misdiagnosed as dyspraxic.

If the experts are confused, I’m certainly not going to untangle the topic in a single blog post, so I decided to set that idea aside and write about general movement difficulties. Aspies are a notoriously clumsy lot. I’m forever tripping over stuff, bumping into stuff, dropping stuff, breaking stuff.

Seriously, if you like your stuff, keep me away from it.

I’ve broken an entire kitchen’s worth of glassware in my lifetime. In the first month of owning a new blender, I broke the glass pitcher not once, but twice. You’d think I would have learned the first time not to put it down so forcefully on the counter. After the second one shattered, I downgraded to a plastic pitcher because a blender is not worth that kind of trauma.

Gross and Fine Motor Impairment is Nearly Universal in ASD

The theories about why aspies are so uncoordinated are many: motor planning deficit, motor development delay, motor timing impairment, problems with initiation or inhibition, imitation and praxis impairments, deficient postural control, under reliance on feedforward control. There are also a handful of other conditions that muddy the waters further: apraxia, ataxia, hypotonia, dysgraphia, dyscalculia, dyskinesia . . .

You see where this is going, right? It would be easy to write a book on the subject and still not cover everything. Just defining all of those things would require a whole series of blog posts.

There are a few things that most of the experts agree on:

Some level of gross and fine motor impairment is nearly universal in people on the spectrum.

Motor impairments may improve somewhat with age, but generally persist into adulthood.

With more study, motor development delays could be a reliable indicator of the presence of ASD in very young children.

It is unclear whether dyspraxia is a separate diagnosis or the features of dyspraxia overlap with features of ASD.

The cause of motor development delay in autism is unknown.

It’s interesting that once again we have something (like insomnia) that occurs in the majority of autistic people but is not part of the diagnostic criteria. Autistic children routinely receive occupational therapy to improve their fine motor coordination, balance and posture; motor impairment is nearly universal. So why isn’t fine/gross motor skill impairment officially one of the diagnostic criteria?

What if Motor Impairments are Connected to More Than Clumsiness?

Some of the research I read about motor skill impairment in ASD is more radical than what you’ll find in the popular literature. Consider these two possibilities:

1. Delayed or nonexistent speech may be the result of a movement disorder. Rather than assuming that nonspeaking autistic individuals don’t have the cognitive development necessary for communication, some researchers believe that there is a physical impediment to performing the necessary movements with the mouth to produce speech.

This isn’t a blanket explanation for all situations in which autistic people are nonspeaking, but it does offer an alternative way of thinking about the relationship between speech and communication. Once we separate the two, thinking of speech in the physical rather than purely cognitive realm, we’re less likely to assume that because a person doesn’t communicate via speech they are incapable of communication.

It also presents another way of looking at the phenomenon of “selective mutism” (temporary loss of speech). Often a temporary loss of speech in autistic individuals is related to a period of high stress. When I’m very stressed, my speech suffers and I can become temporarily mute or significantly impaired.

I also know that during periods of intense stress, I’m more likely to trip and fall while running or to drop things. There is a definite deterioration in my motor coordination under stress. It’s not hard to imagine this extending to the motor aspects of speech.

2. Social communication issues may arise from early difficulties with motor skills. Before children speak, they rely on nonverbal communication for play. If autistic youngsters aren’t modeling the expected nonverbal cues due to motor impairments, they will also fail to receive appropriate nonverbal responses from their peers.

This failure to communicate physically may mean that autistic children have fewer and poorer quality nonverbal interactions with peers and therefore struggle to learn social communication at the most basic levels. As they grow older and nonverbal communication grows more complex, they fall further and further behind.

Facial expressions, hand gestures, posture and body positioning–all physical movements–are the primary tools of nonverbal interaction. If autistic individuals have difficulties with initiating, performing, mirroring, inhibiting or planning physical movement, it stands to reason that this would include difficulties with the physical movements inherent in nonverbal communication.

Social Communication Difficulties in a New Light

It’s interesting to think about social communication and speech difficulties as rooted in impaired motor skills. What if we struggle with speech and nonverbal social communication for the same reason that we struggle with catching a ball or learning to ride a bike?

Is it possible that a group of seemingly disconnected autistic traits have a common root in our motor skills impairment?

In a comment on last Tuesday’s post, Lori from A Quiet Week in the House had a great suggestion: “A thought for your Tuesdays–could you poll your readers? I love reading about other’s perceptions, strengths, and areas of concern. It might be a good way to help others discover coping skills.”

So what do you think, readers? Shall we have a poll?

Wait, before you answer that, let me share something with you that I’ve been wanting to say for a while now. For me, one of the most enjoyable things about blogging is reading your comments. I don’t just mean the “this is great” aspect of the comments, though of course that feels good. More than that, I enjoy when you share your experiences.

I’m just one person. Though I do a lot of research, I write from a very personal perspective. When you read what I’ve written and then share how something affects you, it’s incredibly valuable, not just to me but to everyone else who comes along and reads the post and the comments.

And lots of people do read the comments. What we’re doing here–and I really do mean we as a group–is creating a rich, detailed account of what it means to be an autistic adult. We’re learning from each other and we’re creating something for the hundreds of silent readers who find this blog looking for information on some subject or other.

The Poll

So, the poll. Do you have a question you’ve always wanted to ask other autistic people? It could be something practical like, “how do you cope with _______.” It could be something you’ve noticed in yourself and wonder if others experience. Maybe you’re curious about favorite special interests or stims or stim toys. Maybe you have a tough thing you’re facing in life and want to know if others have dealt with it in the past.

Here’s what we’ll do:

1. Leave a comment on this post with your question(s). You can post more than one question and I’ll try to include everything, but I don’t want the survey to be too ginormous for us to answer.

2. I’ll collect the questions into survey format.

3. I’ll post the survey next Tuesday and we’ll answer then. I want this to be fun and not a lot of work, so let’s plan to answer as many or as few questions as we want. No pressure.

There are two ways I can set up the survey:

If you prefer to answer anonymously, I can create a Survey Monkey survey that we can answer without revealing our identities. I can then bring the answers back here in the form of a post, with all answers kept anonymous. We may get more answers this way.

I can post the questions and we can answer in the comments. We may get more trustworthy answers with this option and we’d be able to ask follow-up questions (within reason, of course).

If you’ve read through the components of my ASD evaluation, you might be wondering but what about the Asperger’s questionnaire?

There wasn’t one. I didn’t complete a written screening or diagnostic test like the RAADS-R or AQ. My ASD diagnosis was based on the diagnostic interview, the outcomes of the cognitive/neuropsychological testing and behavioral observations made by Dr. H and B during my visit.

However, between the diagnostic interview and the behavioral observation, the key questions on the screening instruments were addressed in detail. The diagnostic interview covered questions on my special interests, relationships, social preferences, sensory sensitivities, attention, language pragmatics and fine motor skills. The behavioral observation included general presentation (grooming and dress), gait, speech (rhythm, rate and volume), demeanor, verbal skills, eye contact, movement patterns and conversation habits.

The interview and testing took about five and half hours. It was exhausting. We went straight through lunch, though both B and Dr. H told me that I could ask for a break at any time. The thing is, when I’m that engaged in something, I forget that I need to eat. I may be hungry, but the hunger signal gets muted.

So, exhausted and hungry, wishing I’d taken The Scientist up on his offer of a ride, I scheduled my follow-up appointment and stumbled out to the car. My evaluation was done. In three weeks I’d have a diagnosis.

Or not.

A vague sense of panic settled in as I started rehashing every detail of the appointment. Worse, I knew that I had three weeks ahead of me to perseverate on what I’d said and done and not said and not done. Three weeks to wonder if I’d done “too well” on the cognitive tests, if I’d instinctively made an effort to “pass” in the interview, if I’d withheld key details or reflexively covered my weaknesses.

Three whole weeks to alternately tell myself that this had been the best and the worst thing I’d ever done for myself.

The days passed about as quickly as you’d expect. I was restless and unsettled, plagued by a string of nightmares. The idea that Asperger’s might be something I’d talked myself into or imagined haunted me. My biggest fear–the one I couldn’t shake–was that Dr. H would tell me I wasn’t autistic, that in fact there was nothing wrong with me.

Then what? I’d found this explanation that fit so well. If someone “officially” took it away from me, I would be lost again, left to start over in search of a new, better explanation.

A few words of preface to this piece: I grew up as undiagnosed autistic with a gifted label, so my experience is different from what doubly exceptional children today experience. There were no social stories or social skills classes when I was a kid. Asperger’s Syndrome didn’t become an official diagnosis until I was 25. If you’re younger than I am and grew up with the doubly exceptional label or you have a child who is doubly exceptional, I’d love to hear about the differences or similarities in your/their experience.

—————-

Remember how, back when you were in school, there was one day of the week that was better than all the others? Maybe it was pizza day or the day you had band practice or art class. There was always one day that you looked forward to all week, right?

In sixth grade, for me that day was Friday. On Friday, I got to leave my regular classroom and walk down the hall to the TAG classroom. TAG stood for Talented and Gifted–a town-wide pilot program that accepted two sixth graders from each of the five elementary schools in our small suburb.

Ten geeks, eight of whom were boys. Ten kids who happily poured over reference books on Blitzkrieg and backgammon while the rest of the town’s sixth graders were wrestling with the math and reading curriculum we’d finished the year before.

Looking back, in addition to being gifted, most of us were probably on the spectrum as well. We were all socially awkward to some degree. None of us had to be asked twice to choose a topic for our Type III independent research projects. We came to class lugging backpacks filled with resources. We had entire libraries at home on the subjects we wanted to explore.

No matter what we asked to study, Mr. M, the aging hippie who taught the class, encouraged us. When I told him I wanted to “study” MAD magazine for my second project, he explained the concept of satire and helped me work out why the comics were funny.

Alfred E. Neuman and his famous tagline

TAG was aspie heaven. If I spent the afternoon curled up in a beanbag with my stack of MAD magazines, no told me to return to my seat. If I was the only kid in the class who brought a bag lunch because I couldn’t stomach the school pizza, no one at the lunch table made fun of me. If I needed to have a joke explained, even a whole magazine full of them, there was Mr. M, sitting at his desk, ready to patiently answer our questions with humor and honesty and not an ounce of condescension.

He thought we were the coolest kids around and in that classroom, we thought we were too.

Doubly Exceptional

Today, kids like the ones I shared the TAG classroom with are labeled doubly exceptional or twice exceptional. Back then we were the geeks and the nerds. Particularly if you were a girl and you were smart, people seemed to expect you to be weird. “Normal” girls weren’t smart and smart girls were quirky.

Adults wrote off our quirks as a byproduct of our intelligence. They sent us out to the playground and expected us to figure out how to navigate the social minefields that lurked within kickball games and jump rope circles. We were smart. We would get it eventually. When we didn’t, they reminded themselves that we were smart and because we were smart, we would get by.

And we did, but not always in the way they hoped we would.

As the concept of giftedness evolved, some theorists put forth the idea of giftedness as “asynchronous development,” suggesting that gifted children reach intellectual milestones faster than other children but lag in cognitive, social and emotional development. Proponents of this theory say that children who are hyperlexic, for example, develop in a fundamentally different way because they have access to advanced ideas at an earlier age than other children.

While this may be true of some gifted children, for many it serves to shift the focus away from their developmental disability–explaining it away as a byproduct of their giftedness. It’s easy to look at this model and assume that these children will just magically catch up with their peers developmentally. After all, they’re smarter than their peers. What’s keeping them from being just as adept in the social and emotional realms?

This is a bit like taking a kid who’s a good baseball player, throwing him in the pool, then being surprised if he sinks like a rock. What do you mean he can’t swim? If he’s athletic enough to hit a baseball, surely he’s athletic enough to swim.

Does my metaphor of a drowning child seem extreme?

If you spent your recesses and bus rides and summers at camp getting mercilessly bullied, physically threatened or worse, you probably wouldn’t think so. For kids who are developmentally disabled but intellectually gifted, expecting them to get by on intelligence alone is the equivalent of throwing them in the deep end of the pool without teaching them to swim first. It’s leaving them to drown–emotionally and mentally–all the while telling them how smart they are.

When a Strength Isn’t Always a Strength

Not that encouraging intellectual strengths is a bad thing. Unlike kids labeled developmentally disabled and given a deficit-based course of therapy designed to “fix” them, doubly exceptional kids have an advantage in their intelligence. It allows them to mask a huge portion of their disability.

Oh, wait–is that really an advantage?

Masking our disability with coping strategies and adaptations means that when we fail to hide something, people assume we’re not trying hard enough. Or we’re being deliberately obstinate. Or that we’re lazy, defiant, insolent, shy, ditzy, or scatterbrained.

“What’s wrong with you?” they ask incredulously. “You can memorize the batting averages of the entire Major League, but you can’t remember to put your homework in your backpack?”

And so the doubly exceptional child grows up thinking, “If only I tried a little harder . . .”

No matter how hard she tries, the refrain never changes.

Can’t hold down a job. Can’t finish a degree. Can’t maintain a relationship. Can’t seem to do the things an average adult can do.

“What’s wrong with you?”

If only I try a little harder . . .

Now What?

There is no gifted class in adulthood. No one cares if you can memorize all 20 spelling words after looking at them once. You don’t get to escape life on Fridays, reading MAD magazine while the sounds of the playground drift in through the open windows.

When you arrive in adulthood lacking the social skills that most people have mastered by sixth grade, life becomes exponentially more confusing and hard to navigate. For much of my adulthood, I’ve had the odd belief that someday I would “grow up” and suddenly feel like an adult. That I was just a little behind the curve when it came to social skills and one day everything would magically fall into place.

I don’t know when or how I was expecting this to happen. It’s illogical. Maybe it stems from the belief that social skills are intuitive rather than a skill set that needs to be learned.

Neurotypical people acquire social skills primarily by absorption; autistic people need to be taught social skills explicitly. When we’re not, we’re no more likely to learn them intuitively than a typical person is to pick up algebra intuitively.

Maybe that’s where the problem lies. Adults often assume that if a kid is smart enough to learn algebra in elementary school, he or she is smart enough to figure out social rules too. But who would expect the reverse to be true? What rational adult would say to their kid, “you’re smart enough to find friends to sit with at lunch, why can’t you figure out how to solve this linear equation yourself?”

I (Actually Don’t) Know What You’re Thinking

Even as I write this, I find myself cringing internally. Do I sound like a whiner? Shouldn’t I be thankful for the advantages my intelligence gives me?

Again, I find myself arriving at the notion that if I just tried harder, just applied the intellectual resources I have, I’d be fine.

Yes, intelligence helps. In particular, it helps me identify patterns and come up with rules–rules that any neurotypical adult could tell me, if I asked them.

If I thought to ask. Which I often don’t.

For example, at a get-together at a neighbor’s house, I accidentally knocked over a wine glass. The glass broke; I apologized.

Years later, while reading an etiquette book, I learned that I should have offered to replace the glass. This sounds like common sense now, but it’s not a rule I would have intuited or even thought to ask someone about.

Perhaps this is why the invitations for drinks at that neighbor’s home abruptly stopped? Did they find me insufferably rude? I have no idea.

Worse, when I mentioned the rule to my daughter, she frowned and said, “You didn’t know that?”

There are hundreds of unwritten social rules like this one. I have no idea how people learn them. Perhaps they don’t. Perhaps after a certain point, it becomes all about the dreaded perspective taking. You break a glass and think, “If I were the hostess, what would I want my guest to do to make this better?” And the obvious answer, when I think about it like that, is “offer to compensate for the loss.”

One Rule at a Time

Generally, I learn a social rule by reading about it, having someone explain it to me or seeing it in action. Unfortunately, many rules are executed privately, so there is no chance for me to observe them. The polite guest gets the hostess alone in the kitchen and asks about the cost of replacing the glass. (So says Emily Post.)

Even more frustrating: I’ve had people offer to replace something that was broken at my home. To me, that rule is, “If a guest breaks something in my home, they’ll offer to pay for it.” I don’t instinctively reverse the rule to apply to myself as the guest. If you’ve heard it said that autistic people aren’t good at generalizing, well, there you go.

There’s something at work here that has nothing to do with intelligence.

I’m smart and I’m developmentally disabled. One does not cancel out the other.

This week I took the Famous Faces, which tests for prosopagnosia or faceblindness.

Prosopagnosia, commonly known as faceblindness or facial agnosia, is an impairment in the ability to recognize faces. Although there isn’t a lot of research to support a conclusive link between ASD and prosopagnosia, some degree of faceblindness seems to be common in people with Asperger’s.

Some of the signs of prosopagnosia:

Failure to recognize a friend or family member, especially when you encounter them unexpectedly

Tendency to remember or recognize people based on their hairstyle, gait, voice or other defining non-facial feature

Relying features like hair style/color, facial hair or eyeglasses to recognize people you know well

Failure to recognize people out of context

Failure to recognize yourself in the mirror or in photos

I have all of these except the last one. If my daughter changes her hairstyle or I haven’t seen her in a while, I won’t recognize her right away. I locate my husband in a crowded place by the way he walks, what he’s wearing or his voice.

I rarely recognize people out of context and have actually said to more than one person, “Sorry, I didn’t recognize you out of context.” And that was before I knew anything about faceblindness.

For now, I’ll leave the background on faceblindness short because in researching this test, I found enough information for at least one more post.

Measuring Prosopagnosia

I’ve seen three different types of tests that “measure” prosopagnosia. One is a famous faces test which removes hair and other identifying features from the faces of famous people, requiring you to identity them by facial features alone.

Another type of test shows a series of faces and asks you to identify which of them belong to a set of 20 faces viewed at the start of the test. I took one online (sadly it’s no longer available) and came out in the bottom 20% of scores. My poor working memory probably didn’t help.

Finally, there is a type of test that digitally alters a face and asks you identify what is “wrong” with the face or which face among three (1 altered and 2 not) is different. This measures your ability to recognize “normal” vs. “abnormal” facial structure, a task that is easier for people who aren’t faceblind.

For example, can you tell at a glance what is wrong with two of the three faces below (answer in the caption):

The face on the left has closer-set eyes and the face on the right has a raised mouth. The middle face is unaltered. (Barton et al, 2004)

All of these tests obviously have flaws. A better test might be a series of questions based on the list of prosopagnosia traits, but that doesn’t seem to exist. There is a visual test that is supposed to be accurate at diagnosing prosopagnosia but it’s more time-consuming–we can take that one if folks are interested.

Taking the Test

You can take the Famous Faces test at Test My Brain. Choose it from the list of available tests, agree to the terms and answer the short demographic survey. There are 20 celebrities to identify–it took me about 10 minutes to finish but some of the faces I needed to study for a while, trying to picture them with varying hairstyles, before I could come up with a guess.

Scoring the Test

I did well, but my results may have been influenced by the fact that I’ve taken this test before.

I scored slightly above average but I had an advantage because I’ve taken the test before.

The first time I took Famous Faces, I thought George Clooney was Sean Connery and I mistook Nicole Kidman for Rosie O’Donnell. This time around I got George Clooney right but still missed Nicole Kidman. I also got Angelina Jolie, David Beckham, Fred Astaire, John F Kennedy Jr, Uma Thurman and Susan Sarandon wrong. If the photos had included hair I probably would have missed Uma Thurman, Nicole Kidman (because most blonde white actresses look alike to me) and David Beckham (unless his tattooed torso was included!).

The Bottom Line

The reliability of using famous faces tests to actually diagnose prosopagnosia is poor, but a low score may be indicative of some degree of faceblindness. If there’s enough interest, I’ll hunt down and do a write up on a more reliable test that’s used for clinical diagnosis of prosopagnosia.

This is Part 9 in the I Think I Might Be Autistic series. In Part 8 I covered the diagnostic interview portion of my autism evaluation and in this part I’m covering the cognitive tests, ADHD test and psychological screening questionnaires.

Cognitive Testing

Cognitive testing for ASD is a mix of verbal and nonverbal tests.

Some I found easy; others were a challenge. One actually made me bang my head on the desk, though I stopped as soon as I realized I was doing it because . . . inappropriate. Most were designed to start out easy and scale up in difficulty so that the last few were very challenging.

If you’re planning to be evaluated, you may or may not want to read about the tests I took in detail. Consider this your spoiler warning.

The verbal portion covered things like describing the similarities between two words (i.e. anchor and fence, statue and poem, allow and restrict), defining vocabulary words and answering general information questions. I found the “similarities” test challenging because some of the pairs had conceptual rather than concrete similarities. The other two sections were fairly easy because I’m both a walking dictionary and an encyclopedia of random facts.

The perceptual reasoning portion was a series of visual puzzles: using colored blocks to reproduce a design, deducing which design comes next in a series, and choosing shapes to form a larger shape. These tests were fun, although I found myself guessing at times.

The working memory tests involved repeating back strings of digits in forward and reverse order and doing math problems verbally. By the end of the digit string tests I was rocking back and forth in my chair with my eyes closed tight. The math problems, on the other hand, were fun. All of these tests made me conscious of how much I talk out loud to myself when my brain is working hard.

The processing speed portion involved locating symbols and coding a series of numbers into symbols. These were both fairly straight-forward pattern recognition tests that required balancing speed and accuracy.

Woodcock-Johnson III (partial): A test of academic skills that included orally identifying written words, orally spelling words given by oral prompt, and doing some math problems on paper, ranging from pre-algebra to basic calculus. I got tripped up by “questionnaire” on the spelling test. It’s one of those words that I always use autocorrect on. There is no autocorrect on an oral spelling test.

Wechsler Memory Scale IV (partial): The portion of this I took tested auditory memory. It involved two parts:

listening to a brief factual story and retelling it, including as many facts as possible, then responding with true/false answers to factual questions about the story (two trials)

listening to a long list of word pairs and then responding to a word prompt with the correct paired word (interminable number of trials)

I struggled mightily with both of these. My working memory is poor, especially when working verbally under pressure.

Rey-Osterrieth Complex Figure test: A measure of organization and planning skills as well as fine motor skills. It involves reproducing a complex drawing using a series of colored pencils that allow the evaluator to track the order in which the figure was drawn as well as the accuracy of reproduction.

Thirty minutes later, without any warning, I was asked to reproduce the same figure from memory. This did not go well. If you looked at the sample figure I linked to above, what I managed to reproduce the second time was basically a box with an X through it, a flag sticking out the front and bowling ball floating in the upper right corner. Bizarrely, I still remember exactly what it looked like and could draw that from memory months later.

Word Fluency: A timed test in which I had to think of as many words as possible that fit the following categories: animals, words starting with A, words starting with F, and words starting with S. These were challenging–I started out with a good head of steam but once I lost my momentum, I started perseverating on the words I’d already named instead of thinking of new words. Until I realized that I could name things from around the room that fit the prompt. Aspie adaptation for the win.

California Verbal Learning Test: Another test involving recalling items from a list with multiple trials. Again, I struggled with this one. The correct strategy, which I realized on the fourth trial, was to chunk the words by category to make recalling them easier. There were only five or six trials, so my realization came kind of late. This test also had me closing my eyes and talking to myself out loud because I was so frustrated with how difficult it was. There might have been some cursing. I was getting tired.

Trailmaking test: A connect the dots type of test–first connecting numbers only and then connecting an alternating sequence of numbers and letters. This measures visual scanning and sequencing ability. Surprisingly, I was quicker at the second series, even though it was the more difficult task.

verbally giving the color of a series of Xs there were printed in blue, red or green ink

verbally reading a list of color words, with each printed in a different color ink (i.e. RED printed in blue ink)

This test was deceptively easy. So much so, that when I saw my results, I was shocked. I scored in the “impaired” range on the first two and in the “high average” range on the third (and hardest) test.

Performing better on the more challenging versions of the Stroop and trailmaking tests leads me to believe that I’m more motivated to perform accurately on challenging tasks and if a task is too simple, I get bored and easily distracted.

Other Neuropsychological Tests

Grooved Pegboard test: A timed test of fine motor skills that consists of putting metal pegs in a pegboard, first with the right hand and then with the left. The only problem I had with this one was accidentally switching back to the right-handed order of inserting the pegs (right-to-left) when I was doing the left-handed test (meant to be completed left-to-right).

Reciprocal Motor Programs test: A test of how well I could repeat and then reverse repeat a series of finger taps.

ADHD Test

IVA Continuous Performance Test: This was the only cognitive test conducted by computer. The computer provided visual and auditory prompts at random intervals. If the prompt was a 1, I had to click the mouse. If the prompt was a 2, I had to refrain from clicking. The test was 21 minutes long. By the halfway point, I was stimming ferociously. I was also determined to ace this test (out of fear of being misdiagnosed with ADHD perhaps) so first I pretended that I was an air traffic controller and if I missed a cue, an airplane would crash. When that stopped working, I told myself that if I missed a cue, a puppy would die. Yeah, I take this stuff way too seriously. It took me awhile to wind down after this test was over because I sent myself into a state of extreme hyperfocus.

Questionnaires

I also completed four self-report questionnaires:

MCMI-III: This consisted of 180 true-false questions that test for 14 personality disorders (e.g. schizoid, depressive, compulsive) and 10 clinical syndromes (e.g. anxiety, bipolar, PTSD). There were also some funny questions, like “I am currently in an airplane” meant to verify that I was paying attention. Or not delusional. Hard to say.

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.